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Claude Ann Mellins, Ph.D. 1 Elizabeth Brackis-Cott, PhD 1 Stacey Alicea, MPH 1,2

HIV Prevention and Mental Health Risk Factors in Perinatally HIV-Infected Adolescents: Research-Based Implications for Intervention. Claude Ann Mellins, Ph.D. 1 Elizabeth Brackis-Cott, PhD 1 Stacey Alicea, MPH 1,2 1 HIV Center for Clinical and Behavioral Studies

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Claude Ann Mellins, Ph.D. 1 Elizabeth Brackis-Cott, PhD 1 Stacey Alicea, MPH 1,2

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  1. HIV Prevention and Mental Health Risk Factors in Perinatally HIV-Infected Adolescents: Research-Based Implications for Intervention Claude Ann Mellins, Ph.D.1 Elizabeth Brackis-Cott, PhD1 Stacey Alicea, MPH1,2 1HIV Center for Clinical and Behavioral Studies NYSPI and Columbia University, N.Y. 2Mt Sinai School of Medicine, N.Y. Project funded by NIMH R01-MH63636 (PI Mellins)

  2. The Family Studies Program • Commitment to understanding and improving the mental health and psychosocial needs of HIV-infected and HIV-affected children and their families • Commitment to a research-clinical collaboration • Commitment to bringing effective interventions from the US to low resource countries with the epidemic has devastated families

  3. Acknowledgements CASAH: Mental Health and Risk in HIV+ Youth and Seroreverters National Institute of Mental Health (R01-MH069133; PI C. Mellins, PhD) Team: E. Abrams, M. McKay, PhD, E. Brackis-Cott, Ph.D.; C. Dolezal, Ph.D.; E. Abrams, M.D.; A. Wiznia, Ph.D.; M. Bamji, M.D.;A. Jurgrau, C.P.N.P.; M. McKay, Ph.D., S. Alicea, MA, K. Elkington, PhD, J. Bauermeister, PhD, CS. Leu, PhD, K. Santamaria, Y. Ahmed, V. Escrogima, S. Marhefka, PhD

  4. CHAMP+:Supporting HIV-infected youth and families National Institute of Mental Health (1 R34 MH072382 01A1-02; PI M. McKay, PhD) Team: C. Mellins, PhD., E Abrams, MD, E Brackis-Cott, Ph.D., E Kang, Ph.D., S Marhefka, Ph.D., N Humphrey, Ph.D., D Minott, MPH, J Peterson, MSW, C Miranda, MSW, M Block, MA, G Pardo, MSW, R Hildebran, MPH, A Paulino, MSW, S Ali, MSW, K Dean, MSW, N Nalls, MSW, W Udell, Ph.D., M Hernandez, BA, J Floyd, BA

  5. US-Based Investigative Team Mary McKay, PhD, Co-Investigator Elaine J. Abrams, M.D., Co-Investigator Stacey Alicea, MPH, US-Based Program Director SA-Based Investigative Team Helga Holst, M.D., Co-Principal Investigator Sally, John, MA, McCord Clinical Liaison Arvin Bhana, Ph.D., Co-Investigator Inge Petersen, Ph.D., Co-Investigator Nonhlahle Myeza, SA-Based Program Director CHAMP+SA (NINR (R21 NR010474-01; PI C. Mellins, PhD )

  6. Pediatric HIV epidemic is now an adolescent epidemic in the US With medical treatment advances- few new cases- but aging cohort In NYC by the end of 2005 (NYCDOHMH, 2005) among 2,474 perinatally HIV+ youth 112 (4%) are < 6 years 844 (34%) are ages 6-12 years 1,208 (49%) are 13-19 years 268 (11%) are 20 -24 years

  7. Who are HIV-Infected Youths in the US? Reflection of HIV in women in the first 1 ½ decades of the epidemic: Confluence of HIV and substance abuse, in the context of urban stress and poverty 85% live in urban environments with chronic poverty and endemic substance abuse Ethnic minority status with family histories of racism and discrimination

  8. Multigenerational Psychosocial Adversity HIV often strikes families that have struggled for multiple generations with poverty, co-morbid substance use and mental health problems, and psychosocial stress. Children are at risk for: pre- and post-natal drug exposure urban stress and trauma, abuse and neglect, and domestic violence disruptions of placements leading to multiple separations from parents and caregivers

  9. M.A. is a 34 year old Hispanic single mother with AIDS with history of abuse and trauma Husband was killed She has poor medical follow-up, untreated Mood disorder with Cocaine dependence Living in a shelter ACS involvement due to medical neglect of children C is the 12 year old son who has HIV and was prenatally drug exposed Special education Multiple absences from school and suspensions Behavioral problems “he’s hyper, disrespectful and has stopped taking his medications” The grandmother is an alcoholic who traffics drugs from her apartment and babysits on weekends Case of Family A

  10. Current Situation: Aging HIV+ Youths Born to women with substance use histories and prevalent heritable psychiatric disorders Experienced multiple environmental and social stressors Experienced an extended period of less than optimal HIV medical care (pre-HAART) Aging into developmental stage of presentation of psychiatric disorder, sexual and drug behavior, and social need to “fit in”

  11. MENTAL HEALTH AND RISK BEHAVIOR IN HIV+ YOUTH (NIMH-R01-MH069133; PI Mellins) Mellins, PhD; Abrams, MD; McKay, PhD; Brackis-Cott, PhD; Wiznia, MD; Bamji, MD. Study Design: Longitudinal determinants study of 350 perinatally HIV-exposed 9-16 year olds and their primary caregivers, recruited from 4 major NYC medical centers N= 200 HIV-infected and 150 uninfected youth

  12. Study Goals • Examine the association between HIV illness and mental health and behavioral health outcomes in adolescents • adherence, sexual and drug use risk behavior • Identify family and psychosocial risk and protective factors related to Behavioral Health Outcomes in both groups prospectively over 18 months.

  13. Modified Social Action Theory SELF-REGULATION PROCESSES CONTEXTUAL INFLUENCES BEHAVIORAL OUTCOMES • Social Interactions • Family communication • HIV disclosure • Peer normative beliefs • Perceived illness stigma • Demographics • Child and caregiver age, gender, race, ethnicity • Child development, school • Caregiver type, employment, marital status, education • Stress • Urban stress and violence • Other stressful life events • Child Health/Medical Status • HIV status • Immune function (for HIV+ youth) • Service utilization • Caregiver Health/Medical Status • General health • Mental health, drug use • Social Interdependence • Caregiver-child supervision, involvement, and relationship • Motivation • Future goals • School motivation • Self-esteem and body image • Behavioral Health Outcomes • Emotional and behavioral functioning • Sexual risk behavior • Drug and alcohol use • ART adherence (for HIV+ youth) • Capabilities • Cognitive/language functioning • Social problem solving • Knowledge of reproductive health and STD/HIV transmission • Child Psychiatric Disorder • Presence of DSM-IV diagnoses

  14. Baseline Procedures Participants recruited from 4 major medical centers in NYC serving inner-city populations: Harlem Hospital, Jacobi Medical Center, NYPH, and Metropolitan Hospital. Each youth and primary caregiver is interviewed individually at baseline and 18 month follow-up. Each time point is divided into 2 session (1-2 hours each) Participants are reimbursed for time and transportation.

  15. Outcome Variables Child Psychiatric Disorders: The Diagnostic Interview Schedule for Children(DISC, Shaffer, et al., 1996) Child Emotional and Behavioral Functioning: Child Depression Inventory (Kovacs, 1981) The Child Behavior Checklist-Parent Version (Achenbach , 1991) Substance Abuse (DISC)

  16. Outcome Variables (cont.) Child Sexual Behavior: ACASI or face to face interview (Dolezal, Mellins, et al.) Adherence: modified ACTG procedures (Chesney et al., 2000; Mellins et al. 2002). % pills missed over 2 days (according to caregiver or child) Missed pills in the past month (yes vs no according to caregiver or child)

  17. Measures of Independent Variables Child Health Status: Medical Chart abstraction Stress: City Stress Inventory (Ewart & Suchday, 2002) and Stressful Life Events (Mellins et al) Caregiver Mental Health: Beck Depression Inventory (Beck & Beck, 1972); State-Trait Anxiety Inventory-trait (Spielberger, 1987) Caregiver-child Relationship: Supervision and Involvement Scale (Loeber et al., 1991) Parent Child Relationship Inventory (Gerard, 1994) Child Cognitive Function; The Peabody Picture Vocabulary Test-III (Dunn & Dunn, 1997) Perceived Peer norms (Bauman procedure)

  18. Participants Enrolled and Baseline session 1 completed 206 HIV+ children and 133 HIV- (97%) Baseline session 1 and 2 completed 195 HIV+ and 127 HIV- children completed 2 sessions of Baseline (92%) Follow-up 85% HIV+ kids 58% HIV- kids

  19. Baseline Data: (206 HIV+ and 133 HIV-) Age: 9-16 yrs (51% 9-12 yrs; 49% 13-16 yrs) Gender: n= 173 girls; 166 boys Race/ethnicity: 54% African American; 31% Latino; 15% Other/Mixed Caregivers: only 50% birth parent; 46% HIV + Household income: 57% of sample = < 25K Cognitive function: 52% < 20% on PPVT Health: 64% have detectable viral load (> 400) Disclosure: 69% formally told diagnosis

  20. Results: Child Psychiatric Disorders Child Psychiatric Disorder 61% HIV+ youths vs 49% HIV- youths (OR=1.61., p <.05) Primarily anxiety (46%; sep. anx.; agor.;ocd; phobias) and behavioral (25%, ADHD, ODD) disorders HIV+ youths had significantly higher rates of ADHD (OR=2.78, p < .01).

  21. Variables Associated withYouth Psychiatric Disorder • Caregiver mental health problems associated with presence or absence of any psych. disorder • depression (t= -3.16, p = .002) • anxiety (t = -2.87, p = .004) • Youth Age associated with behavioral dx • Older (OR=2.00; CI=1.21,3.29; p = .01) • Caregiver variables associated with less ADHD • living with biological parents (OR=.50, p=.03), • HIV+ caregivers (OR=.38, p=.01), • caregivers with lower education levels (OR=1.15, p=.01). • However, strong association between caregiver variables and youth HIV status

  22. Results: Substance Abuse Limited Substance Abuse in both groups 4 HIV+ youth vs 8 HIV- youth Alcohol abuse disorder: 2 HIV+ and 1 HIV- youth met criteria Marijuana abuse disorder: 3 HIV+ vs 5 HIV- met criteria

  23. Substance Use(Elkington et al. 2008, submitted to IAC) Alcohol and Marijuana use associated with all sex risk behaviors: oral, vaginal or anal sex, unprotected vaginal sex, multiple partners After adjusting for the effect of peer norms: Alcohol use only associated with oral sex Marijuana use remained a predictor of all behaviors accept vaginal/anal sex After adjusting for the effect of parental involvement: The association between alcohol use and some sex risk behaviors remained  oral sex, vaginal/anal sex The association between marijuana and most sex risk behaviors disappeared Findings did not vary by HIV status

  24. Lifetime Sexual Behavior • Onset of Sexual Behavior (vaginal, oral, or anal) • 10% of HIV+ youths • 14% of HIV- youths (p=ns) • Primarily heterosexual/vaginal sex; limited same sex behavior reported • 28% of HIV+ and 40% of HIV- youth who reported vaginal sex reported unprotected sex (p=ns) • Mean age of onset: • 12.0 yrs (HIV+) vs 13.4 (HIV-) (p = .038)

  25. Variables Associated with Vaginal Sex • Demographics: • Older age (t = -10.80, p < .001) • More Stress: • City stress (t = -7.04, p < .001) • Caregiver-child relationship • less parental involvement (t = 2.47, p = .014) • less child autonomy (t = 2.59, p = .010) • less supervision (t = 3.28, p = .002) • No association with child gender, child cognitive function, child or caregiver mental health, caregiver-child communication

  26. Sexual Behavior (cont.) (Bauermeister, Elkington et al, 2008, IAC submission) Youths’ sexual behaviors varied: 58% none 35% reported kissing, 17% reported touching, 7% reported oral sex, and 11% reported vaginal or anal intercourse. HIV+ youth reported more touching (OR=3.65) and less vaginal or anal intercourse (OR=.22) than HIV- youth.

  27. Lifetime Sexual Behavior (Bauermeister, Elkington et al, 2008, IAC submission) Touching was associated with Permissive peer norms regarding substance use (OR=3.36) Having friends who thought sexually-active boys were popular (OR=2.72) Oral/anal Intercourse was associated with Permissive peer norms re: substance (OR=2.24) Having sexually-active friends (OR=6.19)

  28. Adherence • 35% of youth are not currently on ART • Among the 164 youths on ART: • 19% non-adherent in the past 2 days • 56% non-adherent in the past month • Non-adherence (month) significantly associated with: • youth mental health (more internalizing and externalizing behavior problems) • family factors (less parental communication and supervision, caregiver HIV status) • onset of sexual behavior • Not associated with gender, age, city stress, child or caregiver depression or anxiety, cognitive function

  29. Summary and Conclusions • High rates of psychiatric disorders • in both HIV+ and HIV- youths • Significantly greater rates in HIV+ youths • Early onset of sexual behaviors among those who are sexually active • Health risk behaviors coincided • For HIV + youth mental health, sexual behaviors, and non-adherence were associated with each other.

  30. Summary and Conclusions (cont’d.) • Public Health Concern • Highly ART-experienced children typically harbor multi-resistant virus • Coupled with poorer adherence, cognitive and behavioral problems, and early sexual activity, concern for poor individual health outcomes and transmission of highly resistant virus

  31. Summary and Conclusions (cont’d.) • Family and peer-based Mental health and other risk preventive interventions are needed. • Integrating mental health services into medical clinics may help address health and psychosocial needs. • However: it is unclear what works. • How does this information translate into interventions long term? • Given stigma of both HIV and mental health treatment – how do we reach these families? • HIV-affected youth are often difficult to target and lost to health care systems. What do we do?

  32. Future Directions • Develop models of mental health and health that focus on both risk and resilience as youth transition through adolescents • Not all youth and families had poor outcomes • As these youth begin to age into late adolescents and young adulthood- who does well? • How does this inform our understanding of adolescent development and transition, particularly for vulnerable populations or populations coping with chronic health conditions-CASAH 2 • For early adolescents- develop efficacy-based interventions that help families address multiple youth needs (e.g., adherence, mental health, sexual development).

  33. CHAMP+: Supporting HIV-infected youth and families • National Institute of Mental Health (1 R34 MH072382 01A1-02) • Principal Investigators: Mary McKay, Ph.D., Claude Mellins, Ph.D., Elaine Abrams, M.D.

  34. CHAMP • CHAMP+ draws upon an evidence-based HIV prevention program developed for inner-city pre-and early adolescents and their families, the CHAMP Family Program (McKay et al., 2000). • CHAMP= Collaborative HIV Prevention and Adolescent Mental Health Program. • Goal= promote resilience in uninfected inner-city youth and their families at pre- and early adolescence (prior to the onset of sexual activity).

  35. CHAMP Description • CHAMP attempts to bolster key family and youth processes related to youth risk taking behaviors by • providing opportunities for youth and their parents to strengthen communication skills and family decision-making skills

  36. CHAMP Description (cont.) • Helping parents take leadership in aspects of family life that offer youth protection, such as supervision and monitoring of peer relations, and youth whereabouts and activities • Increasing the youths’ social problem-solving and peer-negotiation skills, particularly in situations of sexual possibility.

  37. CHAMP Description (cont.) • CHAMP is a multiple family-based group intervention, consisting of 12 sessions • Approximately, 10 families are included in each group • A combination of multiple family group sessions and separate parent and child group sessions are used • Family group goal = promoting communication and support both within and between families (e.g. M & M and Newlywed games)

  38. CHAMP GOALS • Goal of separate adult/child groups sessions = • For parents: support from other parents, and frank discussion of strategies for supervision and monitoring, as well as chances to discuss information and communication strategies separately from their children. • For children: developing peer supports, as well as peer pressure negotiation skills to assist in recognizing different types of risk situations, and navigating such situations.

  39. CHAMP Outcome Data • Post-intervention data from several randomized clinical trials • Significant changes in • Family-level variables (family decision making; HIV knowledge; communication comfort); • Caregiver monitoring and supervision • Youth exposure to sexual possibility situations

  40. CHAMP+: Phase 1 • A key aspect of CHAMP that increases the likelihood of cultural and contextual sensitivity is that, for each site in which CHAMP is implemented, consumers • oversee the design of the program, • are involved in aspects of research activities. • Thus, Phase 1 of CHAMP+ involved collaborating with consumers and staff of FCC at Harlem Hospital to design CHAMP+.

  41. The Development of CHAMP+: Phase 1 • With a pilot grant from the HIV Center for Clinical and Behavioral Studies in 2002 5 caregivers of perinatally HIV-infected youth and 3 teenagers met with research staff over 6 months to: • identify salient issues related to HIV, family life, and youth development and risk; • review existing CHAMP family Program to assess appropriateness of content and format and develop new intervention content • discuss feasibility issues • FCC staff also met with research staff to review intervention content, and the feasibility of integrating a test of CHAMP+ into FCC’s service delivery system.

  42. CHAMP+ Family Program • The CHAMP+ curriculum is focused on: 1) the impact of HIV on the family; 2) loss and stigma associated with HIV disease; 3) HIV, health, and antiretroviral medication protocols; 4) family communication about puberty, sexuality and HIV; 5) parental supervision and monitoring related to sexual possibility situations and sexual risk taking behavior, as well as helping youth manage their health and medication; 6) social support and decision making related to disclosure.

  43. CHAMP+ Development: Phase 2 • We conducted a pilot test of one trial of CHAMP+ at FCC at Harlem Hospital. • Six families with a child, ages 9-13 years, who knew his/her diagnosis agreed to participate. • Five of the six families were able to attend CHAMP+ meetings regularly (more than twice) and all six caregiver/youth dyads completed research interviews. • Research interviews consisted of a qualitative interview administered after the intervention.

  44. CHAMP+ Family Program (cont.) • CHAMP+ was delivered using the same format as CHAMP with both multiple family sessions and separate parent/child group sessions. • The pilot consisted of 10 sessions. • Four facilitators led each session. • Each session began with a group dinner to increase comfort, group cohesiveness, and attendance. • Child care, transportation were provided and participants were compensated for their time.

  45. CHAMP+: Preliminary Findings • There is a need to address issues that are specific to HIV before interventions related to family processes, such as family communication, can proceed; • Stigma and secrecy associated with HIV (e.g. disclosure) were raised in the first session. • Both youth and their adult caregivers need the opportunity to ask questions about medical procedures and medications in addition to the information that their doctor provides. • Assumptions that families retain medically related information were incorrect.

  46. CHAMP+: Preliminary Findings (cont.) • Adult participants reported an increase in family communication, social support from others affected by HIV, enhanced caregiver/child relationships, and increased awareness of their child’s needs as a result of participation. • Youth reported that CHAMP+ was a safe place to ask questions about HIV and meet other infected youth. • CHAMP+ was well received: the families made an attempt to keep their groupin place, led by a permanent staff member at FCC.

  47. CHAMP+ Pilot Clinical Trial(1 R34 MH072382 01A1-02) • N= 60 caregiver-child (9-14 yrs) dyads receiving care at 3 pediatric HIV clinics in NYC (Harlem, NYPH, Mt Sinai) are randomly assigned to: • CHAMP+; or Standard of care with the opportunity to participate in CHAMP+ at the end of the study • Both groups assessed at pre-test, post-test and 3-month follow-up • HIV knowledge, strengths and difficulties, family rules and discipline, medication adherence, parent-child relationship, social support, sexual possibility situations, substance use, stigma, social disclosure, depression, and self-esteem

  48. Refining the CHAMP+ Curricula to Meet Site-Specific Needs • Revision of curriculum content (e.g., additional activities/handouts, reordering sessions, reallocating time spent on selected themes, substantial development of youth curriculum) • Creation of a new session to allow caregivers to “tell their stories about HIV” • Renaming the intervention at one site, to help promote site ownership of the program • Exploring the needs of Spanish-speaking consumers

  49. Where are we now? • Clinic 1: • Completed consumer and staff consultation meetings • Completed the first intervention group & assessments • Completed the second intervention group & assessments • Clinic 2: • Completed consumer and staff consultation meetings • Completed the first intervention group & assessments • Conducted individual qualitative interviews with Spanish-speaking consumers • Clinic 3: • In the process of planning for implementation of consultation meetings

  50. Concluding Thoughts • Needs of this population are substantive and not easily addressed in short term interventions • Challenges of implementing efficacy-based interventions in medical clinics, even with mental health provider • Healthy respect for the challenges these families face that were barriers- medical illness, substance abuse, snow storms, lack of funds • Preliminary qualitative data indicate positive response from both families and clinic staff

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